Health status of children alive 10 years after pediatric liver transplantation performed in the US and Canada: report of the studies of pediatric liver transplantation experience

Vicky L Ng, Estella M Alonso, John C Bucuvalas, Geoff Cohen, Christine A Limbers, James W Varni, George Mazariegos, John Magee, Susan V McDiarmid, Ravinder Anand, Studies of Pediatric Liver Transplantation (SPLIT) Research Group, S Dunn, J Menendez, V Gopalareddy, M Jonas, L Krawczuk, R Kane, H Solomon, E Phillips, T Heffron, J DePaolo, T Pillen, G Smallwood, L Davis, D Welch, J Bucuvalas, W Balistreri, F Ryckman, A Howkins, S Krug, M Narkewicz, R Sokol, F Karrer, K Orban-Eller, E Rand, C Goodsell, G Mazariegos, L Chien, A Smith, P Atkinson, G Telega, S Lerret, J Nebel, J Roden, N Mittal, B Friedman, L Arnott, D Cross, L Cutright, E Faye, E Alonso, R Superina, P Whitington, J Lokar, K Neighbors, S Kelly, W Andrews, J Daniel, V Fioravanti, A Tendick, D Desai, S Jarvis, E DeLuca, A Fecteau, V Ng, J Tector, J Lim, J Molleston, J Pearson, P DeRusso, P Colombani, M Alford, C Bhave, L Wilson, R Jurao, H Shokough-Amiri, H Grewal, S Powell, D Freese, J Weckwerth, J Greseth, L Pearson, L Young, R Fisher, M Akyeampong, M Benka, A Lassiter, S Emre, B Shneider, S Cuellar, R Gagliardi, S Lobritto, L Smith, K Ventura, L Book, P Harren, M O'Gorman, C Kawai, L Bruschke, J Kraus, R Thorson, F Alvarez, S Martin, C Viau, H Soriano, K Falkenstein, R Shepherd, J Lowell, M Nadler, K Cox, W Berquist, M Kreisl, S Alvarez, R Berquist, S Karpen, J Mayo, J Goss, B Carter, D Ybarra, S McDiarmid, S Fiest, S Gilmour, L Greet, N Kneteman, J Lavine, A Khanna, R Clawson, P Rosenthal, D Filipowski, J Roberts, J Millis, P Boone, R Gonzalez-Peralta, M Hodik, M Langham, A Tzakis, T Kato, D Weppler, L Cooper, M Gonzalez, A Santiago, J Lopez, J Magee, V Shieck, A Humar, B Durand, A Langnas, D Antonson, J Botha, W Grant, D Sundan, D Andersen, B Fleckten, J Fair, L Book, K Seipel, B Shaw, C Torres, P McIver, J Young, A Raizada, T Shisler, M Orloff, T Rossi, C Hill-Sober, G Halff, J Silva, S Horslen, K Larocque, M Kalayoglu, A D'Alessandro, N Erickson, R Judd, S Knechtle, E Spaith, Vicky L Ng, Estella M Alonso, John C Bucuvalas, Geoff Cohen, Christine A Limbers, James W Varni, George Mazariegos, John Magee, Susan V McDiarmid, Ravinder Anand, Studies of Pediatric Liver Transplantation (SPLIT) Research Group, S Dunn, J Menendez, V Gopalareddy, M Jonas, L Krawczuk, R Kane, H Solomon, E Phillips, T Heffron, J DePaolo, T Pillen, G Smallwood, L Davis, D Welch, J Bucuvalas, W Balistreri, F Ryckman, A Howkins, S Krug, M Narkewicz, R Sokol, F Karrer, K Orban-Eller, E Rand, C Goodsell, G Mazariegos, L Chien, A Smith, P Atkinson, G Telega, S Lerret, J Nebel, J Roden, N Mittal, B Friedman, L Arnott, D Cross, L Cutright, E Faye, E Alonso, R Superina, P Whitington, J Lokar, K Neighbors, S Kelly, W Andrews, J Daniel, V Fioravanti, A Tendick, D Desai, S Jarvis, E DeLuca, A Fecteau, V Ng, J Tector, J Lim, J Molleston, J Pearson, P DeRusso, P Colombani, M Alford, C Bhave, L Wilson, R Jurao, H Shokough-Amiri, H Grewal, S Powell, D Freese, J Weckwerth, J Greseth, L Pearson, L Young, R Fisher, M Akyeampong, M Benka, A Lassiter, S Emre, B Shneider, S Cuellar, R Gagliardi, S Lobritto, L Smith, K Ventura, L Book, P Harren, M O'Gorman, C Kawai, L Bruschke, J Kraus, R Thorson, F Alvarez, S Martin, C Viau, H Soriano, K Falkenstein, R Shepherd, J Lowell, M Nadler, K Cox, W Berquist, M Kreisl, S Alvarez, R Berquist, S Karpen, J Mayo, J Goss, B Carter, D Ybarra, S McDiarmid, S Fiest, S Gilmour, L Greet, N Kneteman, J Lavine, A Khanna, R Clawson, P Rosenthal, D Filipowski, J Roberts, J Millis, P Boone, R Gonzalez-Peralta, M Hodik, M Langham, A Tzakis, T Kato, D Weppler, L Cooper, M Gonzalez, A Santiago, J Lopez, J Magee, V Shieck, A Humar, B Durand, A Langnas, D Antonson, J Botha, W Grant, D Sundan, D Andersen, B Fleckten, J Fair, L Book, K Seipel, B Shaw, C Torres, P McIver, J Young, A Raizada, T Shisler, M Orloff, T Rossi, C Hill-Sober, G Halff, J Silva, S Horslen, K Larocque, M Kalayoglu, A D'Alessandro, N Erickson, R Judd, S Knechtle, E Spaith

Abstract

Objectives: To determine clinical and health-related quality of life outcomes, and to derive an "ideal" composite profile of children alive 10 years after pediatric liver transplantation (LT) performed in the US and Canada.

Study design: This was a multicenter cross-sectional analysis characterizing patients enrolled in the Studies of Pediatric Liver Transplantation database registry who have survived >10 years from LT.

Results: A total of 167 10-year survivors were identified, all of whom received daily immunosuppression therapy. Comorbidities associated with the post-LT course included post-transplantation lymphoproliferative disease (in 5% of patients), renal dysfunction (9%), and impaired linear growth (23%). Health-related quality of life, as assessed by the PedsQL 4.0 Generic Core Scales, revealed lower patient self-reported total scale scores for 10-year survivors compared with matched healthy children (77.2±12.9 vs 84.9±11.7; P<.001). At 10 years post-LT, only 32% of patients achieved an ideal profile of a first allograft stable on immunosuppression monotherapy, normal growth, and absence of common immunosuppression-induced sequelae.

Conclusion: Success after pediatric LT has moved beyond patient survival. Availability of an ideal composite profile at follow-up provides opportunities for patients, families, and healthcare providers to identify broader sets of outcomes at earlier stages, ultimately contributing to improved outcomes after pediatric LT.

Conflict of interest statement

The authors declare no conflicts of interest.

Copyright © 2012 Mosby, Inc. All rights reserved.

Figures

Figure 1
Figure 1
Kaplan-Meier probability of patient survival, 10-year and non–10-year survivors (n = 632).
Figure 2
Figure 2
Kaplan-Meier probability of acute rejection after LT in children.

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